A User Guide to the GF/CF Diet for Autism, Asperger Syndrome and AD/HD

Luke Jackson, who is 12 years old and diagnosed with Asperger Syndrome, is the author of A User Guide to the GF/CF Diet for Autism, Asperger Syndrome and AD/HD.   He writes a short, simple book for parents, professionals, and children who are interested in the gluten and casein free diet.  Luke writes about his experiences on the GF/CF diet.   He writes surprisingly well and the book is an easy read.  It helped me as a parent to reinforce some things that I have read about in the past but forgot.

Gluten is found in most grains including rye, wheat, barely, and oats.  Casein is an animal protein found in all dairy products and many other prepackaged and prepared foods.  Some health care professionals, researchers and parents of children with Autistic Spectrum Disorders have some evidence that suggests that some individuals are unable to metabolize the proteins from gluten and casein, and therefore react negatively, emotionally and physically.   This is somewhat similar to celiac disease in that those individuals are unable to digest gluten.  However, people with celiac disease have intestinal damage, and blood analysis shows an “allergy” to gluten, whereas children with gluten/casein intolerance do not necessarily have celiac disease.

            As some parents of children with Autistic Spectrum Disorders are aware of, the GF/CF diet can offer some hope of improving their child’s condition.  This book provides information about the experience of being on the diet, and the benefits that the author and the rest of his family recognize from the diet. 

One of 10 appendices written by the author’s mother, Jacqui Jackson is devoted to GF/CF recipes, along with an example of a week’s food diary to help families recognize what types of foods are typical for lunch, breakfast, dinner and snacks.  There are also some good suggestions for what to pack for school lunches.  From our experience with the diet, it is important to have items that are easy to pack, tasty and that allow kids to feel as though they are similar to their peers when it comes to the food they eat.

Toward the end of the book there is a section on the “Do’s and Don’ts” of the diet.  Additionally, he includes a section on “Frequently Asked Questions” and tips for parents who are starting their child on the diet.  Luke provides some simple, obvious solutions that are helpful for those individuals who are not sure if they really want to undertake this diet.  This just reaffirms that this diet is not necessarily a cure all and that it takes a huge commitment from the entire family.  The logistics involved in making the diet work are complex, and finding the foods sometimes requires diligence, persistence, and expense.

            Appendices 7 and 8 include a distributor list of those companies that provide gluten and casein free products.  Many of the companies are mail or Internet order only, although our family has found that our local health food store stocks some of the basic items that are needed.

            I found it interesting that in the UK, if your doctor recommends being on the GF/CF diet, an individual can get a prescription for foods, and some of it may be reimbursed by insurance.  Of course that is not the situation in the U.S.

This book provides an interesting perspective because a child who is on the gluten/casein free diet wrote it.  He also indicates that the diet has helped his brother who has AD/HD.  He describes his experiences of how it changed his behaviors and mood, and how he feels about the taste of GF/CF foods.  He does not describe feeling deprived of “real “ food, as he feels physically ill with gastrointestinal distress if he ingests gluten and casein.  His book could be beneficial to other children as they may realize that they are not alone.  My six-year-old son frequently asks for reassurance that other kids are on the diet and once he hears this reassurance it seems to give him some satisfaction.  Luke also gives parents insight into what their child might be experiencing but are unable, or unwilling to share their feelings.

The author describes how things changed for him once he started the diet.  He explains that his tactile sensitivity decreased, his gastrointestinal health improved, etc.  The most difficult thing about the diet is following it strictly.  When our child is on the diet 100%, the effect is dramatic. However, with school cooking projects, birthday parties etc., we haven’t taken the stance that he can’t eat these foods at those times.   Maybe there will come a time when this becomes a necessity, but for now, we aren’t willing to deny him that experience.  It seems as though it is a balance for our son and us.  We see significant benefits from the diet at this time, and for that reason we allow breaks from the diet.  Specifically, it should be pointed out that it is extremely difficult to follow the diet while traveling.

The author provides a disclaimer that this diet will not work for everyone.  He explains that there may be varying degrees of effectiveness.  It is true that if you never try the diet, you never know what benefits it may bring.  For our child, the diet improves his ability to handle frustration, increases his ability to cope with sensory input, decreases his aggressiveness, and it completely eliminates inappropriate vocal outbursts.  Also, when he is gluten and casein free he rarely complains of gastrointestinal discomfort.  This diet has had a major impact on our lives for the better, and hopefully this book will inspire others to take a chance and see if this diet will have positive impact on theirs.

© 2003 Monique Thorton

Monique Thornton earned her MSW in 1993 from the University of Kansas, and is the mother of a 6-year-old with Asperger Syndrome.